LONG ISLAND OPINION

LONG ISLAND OPINION; DES Victims: Search Must Go On

By Candice Tedeschi; Candice Tedeschi of Roslyn is coordinator of the DES Screening Center at Long Island Jewish Hospital and a board member of DES Action USA, a nonprofit organization.

Published: December 24, 1989

BY the end of this year, critical research into the effects of DES (diethylstilbestrol) will come to an end, despite the fact that millions of men and women born between 1941 and 1971 still suffer the effects of this ''wonder drug,'' and most of them still don't realize that the future may hold problems for them.

As coordinator of the DES Screening Center at Long Island Jewish Hospital, I treat DES-exposed daughters. The problems of DES exposure have not gone away. The women I see on a regular basis will probably need special exams for the rest of their lives. We are still trying to determine what effects the drug will have had on the next generation.

Unfortunately, the principal problem with the DES-exposed is still the search to identify those who do not know they are affected. We call these peopls MII's, missing in inaction, and that may remain their fate unless funding for research is restored.

Diethylstilbestrol, a powerful synthetic hormone, was given to an estimated 4.8 million pregnant women in the United States over a 30-year period, resulting in problems for the millions of daughters and sons exposed in utero to the effects of the drug. DES-exposed daughters suffer problems ranging from infertility, ectopic pregnancies and premature deliveries to vaginal and cervical cancer.

We strongly suspect the sons are at increased risk for infertility problems and testicular cancer (there has not yet been the funding for the research that we feel will confirm this suspicion). Anyone born during the period the drug was given, especially those experiencing such problems are a result of the DES their mothers took. It is critically important they be located and sent for special screening exams to insure proper medical treatment. (Nor have the mothers escaped the direct effects of DES; women who took the drug to prevent miscarriage are at 44 percent greater risk for breast cancer.) Vital to the identification and treatment of the DES-exposed is a research project called the DES-Adenosis Study (Desad), which has been funded by the National Cancer Institute since 1974. The $271,000 grant needed to continue this work has been denied for 1990. Unless funding is restored for fiscal year 1991, research work will cease and the cohort group of 4,000 DES-exposed daughters, plus 1,000 nonexposed controls, will be disbanded.

That cannot be allowed to happen. Many more men and women are victims of DES than those of other medical problems that gain most of the attention and money.

The money needed to fund Desad is laughably small compared to what is being spent on other medical problems. For years, we've had to be satisfied with this drop in the bucket; now the National Cancer Institute is squeezing the faucet closed completely. It is but the latest example of the inaction that has allowed the DES problem to go untreated for many of those affected.

The story of DES is disgraceful. As far back as 1953, the drug was known to have no positive effect on sustaining pregnancies, the purpose for which it was created, yet it was administered until 1971 in the United States. It is still being administered abroad, in some cases sold over the counter. In the United States, DES is still authorized for estrogen replacement in menopausal women and is the active ingredient in the morning-after birth-control pill. It is in widespread use overseas to suppress lactation in women who choose not to breast-feed.

The termination of the Desad project will destroy a vital source of information that we need to continue our efforts to study the effects of DES and identify and educate the DES-exposed. It is also vital to our colleagues in Europe and Canada, where Desad is their only source of research information. The cohort base it has taken 15 years to build must not be allowed to erode through neglect.

The cessation of DESAD will have long-term negative effects on the large numbers of DES- exposed, those that we have identified and those still unaware of their exposure.

Anyone interested in more information on DES may get in touch with DES Action USA, Long Island Jewish Medical Center, New Hyde Park, N.Y. 11040; 516-775-3450.